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September 10, 2013

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Review from Guidestar
September 10, 2013

I have never met anyone like Stephen and Barbara Byer and ALS WORLDWİDE whole my life. When I first talked with them . I really felt the sincerety like even more than any of my relatives. They were the only one who really understood our situation. Our feelings about not being able to do anyhing about our most loved one,my mum, was killing us day by day but they gave such great help and support that we could continue our life.they made us obtain symptom relieveing meds that were really helpful. You feel that you are not alone and there is hope and there is something to do.This is very important because if you lose your hope , you löse everthing as this is the worst diagnosis that the human being can take I think.
I also met them in İstanbul,they were really helpful and kind. We spent several hours together but I haven't seen any sign of that they got bored of our several questions that we hadn't got reply from anyone until then .They were so friendly and sincere. We really had great time together. They also spoke with my mum on Skype and fortunately directed us to the doctor Merit Cudkowich from MGH. They helped us with the all contacts and procedures step by step.By means of them,we got the courage to see doctor abroad. And I think this is the most true decision we have taken so far.
We had some problem at the biiling department at MGH. We were really got shocked and stressed. They were the first people I called without hesitation and again only people who really relieved us. I don't know what I could do without their assistance.By their support ,we could turn back to our country in safe.Thanks to God ,we met them in this really desperate situation . We are very lucky and we will be debtful and grateful to them throughout our life.And they have never charged anything from us for their service so far.



Yasemin Akarsu


More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 9, 2013

more

Review from Guidestar
September 9, 2013

My thanks for the work done by Steve and Barbara and all who make up ALSWW is enormous to say the least. Their selfless dedication to investigate every avenue of potential treatment and assistance while striving to protect a desperate and highly vulnerable group is to be commended.

Their
ability to successfully petition for an open label trial of Dexpramipexole has allowed me to slow the progress of this terrible disease and afforded me a commodity upon which no price can be placed – time with my family. At ages 4 and 9 my children have the myriad experiences of growing up still ahead of them and there is nothing I wish more than to stand by my wife and watch our children grow, to laugh and play with them, to pick them up when they fall down, and to give them the unconditional love that only a parent can know. These are things I had been told I would never know.

The efforts of ALSWW have given me more than just invaluable time with my family, they have also given me a glimmer of hope. The medications they provide help me to maintain a functional existence while my family and I wait for the breakthrough that will bring an end to this cruel and relentless disease. I have no doubt that an answer is near at hand, but without the efforts of organizations such as ALSWW this answer is at risk of remaining just beyond our reach.

I am deeply grateful for not only the medical support I have been given but also for the understanding and compassion shown by Steve and Barbara. They have been a rare source of warmth in what is often a cold world of life with ALS. I would ask any who can to support them in their endeavour to overcome this terrible disease and play a part in bringing hope and joy to thousands who have been given only despair.

Our sincerest thanks

The Edwards family
Sydney, Australia

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

September 9, 2013

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September 9, 2013



In the early stages of my disease, we searched everywhere for a cure; the internet, medical and non-medical sources . Friends and family were also searching and offering contacts. We looked at a variety of "cures", we traveled within the USA and were about to travel to India when we
heard about ALS Worldwide, Stephen and Barbara’s mission, their son Ben , and their willingness to share the knowledge they were compiling. They never claimed to be an expert but rather would travel to meet and speak to the scientists in the field as well as expose the frauds. We would never be able to find this information on our own.

Over these past four years, ALS WW has countered our despair with hope and our questions with options, all the while building a friendship of humor and mutual fondness for each other. We can't thank ALSWW enough and don't know where we would be without ALSWW.

Kathy Keenan
Bennington, VT


More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

September 9, 2013

more

Review from Guidestar
September 9, 2013

Dear Friends of ALS WORLD WIDE:

I would like to provide you with a testimonial to both the incredible Organization of ALS Worldwide, and most importantly the dear souls , the Byers, who have dedicated their entire lives of "Devotion" to the cause of Helping all ALS afflicted patients and
their families with so much love and caring and help. Let me explain :

First, some context please: My Wife of 47 years, Elaine , 65 years old at teh time, and in great health, had slurring issues develop and worsen in 6 months. Some misdiagnosis occurred , our panic when it was tested with the abhorrent EMG test and found to be ALS, followed by our personal denials and the familiar Lyme disease diversion routines, then massive searches for the #1 ALS clinics, Doctors who were at the top of all ongoing clinical trials, and not to dismiss the terrible sadness and dejection on our part when we researched the progression rate and the absolute guarantee of death (100% ) of varying degree's ,but terminal certainty and short longevity. We commenced into the short 2 year journey with God, Dr Merit of Mass General Clinic, and our new Dear Loved Friends, Barbara and Stephen Byer, of ALS WORLDWIDE.

During our research , we found that there was a myriad of sites professing to help with what 'cures, clinical trials, mouse and genetic research, patient variability, and on and on. Baffling beyond imagination. At the ALS Clinic at Mass Gen, we were told we would not be eligible for any current Clinical trials..they were all closed already. That the promising Biogen medication in the phased trial had promise, but all dosages were taken. DEAD END FOR US. We were suggested to look up ALS Worldwide who had some very limited access to the Biogen drugs approved by the Feds for special needs. We then contacted Barbara and Stephen Byers at ALS Worldwide for help.

The Extent of help by this INCREDIBLE couple and organization cannot be understated. They provided the most important of all medicines possible in this world...namely LOVE, CARING, SUPPORT, MEETING US PERSONALLY, THEIR WORLD WIDE DEDICATED TRAVELS TIRELESSLY FOR EVIDENCE OF PROGRESS MEDICALLY, AND RESEARCH OF EVERY KNOWN TRIAL FOR ALS, STATUS OF THOSE EFFORTS AND SO MUCH MORE. They shared with us the loss of their son to ALS, and gave us a copy of a personal movie of his life that he made and the insurmountable courage and achievement he achieved...it was breathlessly exhilarating. One could hardly feel down when you meet with these Owners and their absolute saint like devotion to every single human being who has this evil disease. They felt everyone's pain personally.

Having said that, they managed to find us a prescription to the experimental medicine from within their organization allotment . We were blessed, it gave us some hope for survival, albeit small because of the nature of the disease...but hope it was. Further, their research into all world wide medical trails and developments is one of a kind. In essence, one site, all information one needed to comprehend what is and not possible and what is the medical hope of the near future for patients. What more could one ask.

My wife died from complications of ALS. I know she loved the Byers deeply, and Dr Merit too of MGH who works with Steve and Barbara as well. I would ask every single person who has any means to support this organization , your generosity is so very needed to help them continue their pursuits and provide the leading patient support and critical information base in the world. ALS is EVIL beyond any single Neurological disease. Brings a healthy person to the depths of human dignity loss. It must be helped, cured and supported. I truly beg of all you who read this note to give with your heart and dig deeply for all those souls who suffer this tragic prognosis. I and my wife in Heaven thank you for any support you might provide.

CHUCK AND ELAINE GOSLEE
EASTHAM, MA 02642
NAPLES , FL 34114

Ways to make it better...

If I had to make changes to this organization, I would...

NOT CHANGE ANYTHING.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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